[likkaParticipant]

Hello everyone, I’m recently diagnosed with Smouldering Myeloma. My tests are all very positive. Watch & wait with 3 monthly checkups.

However I am in constant pain, my ankles in the morning are so sore I struggle to walk, throughout the day it’s my joints that ache, my elbows get so sore and weak at times I can’t lift things. My neck is constantly sore (left side) and I’m tired ALL the time.

My haematologist told me these are not symptoms of myeloma, he is talking about referring me to a rheumatologist.

Has anyone else had similar symptoms and could give me advice on questions I should ask? Websites I could look at for advice? or suggestions of what it may be? Is it linked to Myeloma?

I have had tests for rheumatoid arthritis and tissue disease, last year I had an ECG (for the breathlessness) all normal.

Any help would be greatly appreciated x

Kirsty x

[loopykatParticipant]

Hi Kirsty, welcome to the club! I’ve had my smouldering myeloma diagnosis for coming up to 2 years now and I’m very similar to you. My bloods are good and my haematologist said that the other symptoms I’m experiencing are not connected.

The reason I was diagnosed with smouldering myeloma was because I was on a pathway for a ME/chronic fatigue syndrome diagnosis and there were a few last tests they required before being referred to the clinic. I now have a ME/CFS diagnosis too, it may be worth looking into for yourself.

[likkaParticipant]

Thankyou for your response, again similar to me. I was tested for so much, then they thought Lupus, during those tests a result flagged Myeloma.

I feel so deflated as I thought I had answers to the pain! But I will keep pushing on and hope I get answers.

Thanks again x

[leicsladParticipant]

hello to you all
i am 70 yrs old paraproteins 36 and bence-jones light chains. i have been smouldering now for 10yrs get occasional aches and pains which like youselves get told nothing to do with myeloma never the less still worrying. i am on 3mth watch and wait and annual pet scan for bone lesions. fatigue is an issue but if your tired rest. try not to get paranoid about aches and pains just look after chest infections. keep safe and well i am sure alternative is worse. be positive steve

[robinfParticipant]

Smouldering myeloma – I have smouldering myeloma (65), diagnosed in June 2023, paraproteins were at 32. Went for all the preliminary tests, endless weekly Blood tests, Bone marrow biopsy, full body MRI scan. My chenotherapy trearment had to begin in February2024 DVTD. This was a course of 4 cycles (4 wweks). I then on completion of this had to undergo my stem cell harvest which was in September 2024. Admitted to hospital (Kings College Hospital) in January 2025, underwent my SC transplant 14/01/25. The staff and nurses were superb. My consilidation trearment has begun 2 cycles. last chemo DVTD will be 21/05/25 will be my last Chemo treatment. I must than have a Bone Marrow biopsy to access the SC transplants result. I have been told that a SC transplant increases your odds of remission enormously. So I am praying for this. I have continious back pain if I stand or walk for mor than 30 minutes. My fatique is not too bad.

[williams34Participant]

It’s understandable to feel frustrated and confused by these symptoms. While fatigue and bone pain can sometimes be linked to myeloma, joint pain and swelling-especially in the ankles, elbows, and neck-aren’t typical for smouldering myeloma, which usually doesn’t cause symptoms until it progresses. Your haematologist’s referral to a rheumatologist is a good next step, as these symptoms could be due to another condition like arthritis or an autoimmune disorder.

Before your rheumatology appointment, consider asking:

What further tests will help identify the cause of my joint pain?

Could I have an autoimmune or inflammatory condition?

What are the treatment options to manage my pain and fatigue?

How might these symptoms affect my daily life and activities?

Bringing a symptom diary can also help. It’s reassuring that your tests for rheumatoid arthritis and tissue disease were normal, but a rheumatologist can look deeper into other possible causes. Wishing you answers and relief soon.

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